Nice PET ;) Updated 3-13, please read.
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I was going to update to let y’all know Dr. Kato said no to surgery right now. I’m ok with that, and will keep doing the chemo. Dr. Kato wants my right lobe to be clear for surgery, so I will keep him updated.
Tiffany,.
I am so glad to hear that your tumors have shrunk and I hope that continues. You are doing all the right things just as the others have said. Stay strong and keep fighting until the battle is won. Hugs, PeggyP
Tiffany-Congrats, sounds like you are heading in the right direction. I suggest you start throwing Dr. Kato or Dr. Chapman name around to your doctors. These 2 doctors are probably the top in treating CC patients and have had SUCCESS in treating our cancer, and have said yes when others said no. I would get your doctors opinion on there work, I am sure they know of them. Dr. Chapman of course in my “hero” so if you need another opinion please contact me for info/number. I pray Dr. Kato has great plans for you.
Lots of prayers-CathyTiff…. I believe that physicians appreciate well informed patients. That is why I believe you are doing everything right by consulting with numerous specialists however; one must expect to encounter a difference of opinions. And, that is quite alright and should not hold you back from gathering additional information.
Fingers are crossed.
Hugs,
MarionYes Lainy he is an awesome doctor! And this email was last night at 8pm!! Praying that God sends me on the right path.
Tiff, I can see why you are all so in love with Dr. Javle. What a compassionate man. I know it’s hard to be patient but you know too it is all a waiting game. Soon your questions will all be answered but it appears you are traveling a good path!
OK Guys…I emailed Dr. Javle and he replied within the hour (what a great guy). Here is the emails-
Me- Dr Javle,
When we seen you last month, we didn’t talk much about surgery. I had a PET scan last Friday and the results looked good to me!
Here is some of the report:the left lobe intake is less confluent and overall decreased in intendity. Current max SUV is 7-8, previous was 12-13
Right lobe previous SUV was 6-7 now is 3-4.
No other foci of abnormal F-18 uptake.
Specifically, there is no evidenace of abdominal aoric aneurysm. No suspicious pulmonary nodules are appreciated.
Impression:
Locally positive response to therary without PET/CT evidence of nodal or distant metastases.With this being said, I would really like for you and your team to look over my case again for surgery. My goal is to have this cancer removed from my body.
Also, I had a small reaction to the Cisplatin today: After about 10 minutes my face got blood red, my temp went up, my heart rate was around 130, my bp went up, and I was having shortness of breath. They got it under control, and I got to finish the Cisplatin with it going in at a lower speed.
I also wanted to get you’re thoughts on radioembolization, is this something I need to look into? I want to be as proactive as possible with this cancer. I’m worried that the Gemzar and Cisplatin will quit working, and my tumors will grow.Thanks for your time and support
Dr. Javle- Hi Tiffany, Good news, I am very happy to hear of this. Regarding the cisplatin-this is not uncommon, but we will need steroids, benadryl and pepcid-like for taxol. Please discuss with Dr Shah. I think in future we should give as a slow infusion over 4 hours. The trouble is the amount of tumor in the liver. In your case, I feel we are going to see continued response for a long time. But surgery if less than curative can make things worse.
I do think in future, we will do PET scans whenever you come down. I definitely think Y90 should be considered. But we should get as much mileage from current therapy as possible. I do think its going to work for a while.
With all this being said. I got an email that Dr. Kato is looking at my scans today, and that I will hear today or tomorrow from him. Talk about stress! What if Dr. Kato says yes, and Dr. Javle said no to surgery. Advice. LOL
Great news Tiff! You know how we LOVE that shrink word! Let’s see what Dr. Javle says, wishing you the very best news to come.
Tiff: What a wonderful result!! Shrinkage is good. And I’m not a Dr. either, but I’ve had enough explained to understand that what you received was a pretty darned good report. My surgeon would have been beaming. My OTHER oncologist would have been beaming. And Dr. Kemeny MIGHT possibly have cracked a grin. at news like this!!
Happy dancing (in my head) going on for you tonight!!Ok, I just sent Dr. Javle an email, asking his team to look at me again for surgery. Maybe I will hear back from them soon. I also asked about the radioembolization.
Thank you everyone for your support! We are thankful that things are kinda looking up.
Hi,Tiffany,
This a a good report,like Jim said, you should send this to Dr. Keto or Dr. Chapman for the possibility of surgery as you had mention before that D r. Jalve you may be a candidate for surgery if the tumors shrunk.
Eli’s comment explains very well about your PET scan report.
If base on the SUVmax value in general for the liver, you are in very good shape especially the right lobe. Please also consult an interventional radiologist for the possibility of radioembolization .you may be a good candidate for it.
Please ask dr. Jalve FIRST about his assessment of the possibility of surgery and radioembolization to show your respect about his opinion ,then do the above 2nd and 3rd surgical consultation. You do want to keep a good rapport with him ; for me a good rapport with other medical professionals can sometimes save your life. Good luck
God bless.
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